Monday, September 11, 2017

Lt. Charles Joseph Margiotta

Today marks 16 years since that fateful day that would change the course of our history as we know it.  I struggle today with the words to say here.  I can recount numerous times where I was and what I was doing when terror struck our country.  Today I get to teach my precious little 5 year old boy all about this day, Patriot Day.  It's not a good thing to do but it's time he start learning.  I was a 17 year old girl in high school when this happened.  Neither one of my kids were even thought about at this time.  Their innocence is something to be admired, but today I live with grief in my heart.

Many many years ago I chose to honor a first responder, a hero, every year on this very day.  I watched a documentary several months ago and when I saw his picture flash across the screen I exclaimed to my husband "that is the hero I honor every year."  It's not just about honoring him every year, but it's about honoring everyone that lost their lives to this tragic event. This year is no different.  He was an honorable man, who chose to go to the Twin Towers that morning because it was his duty. He lost his life that morning but no telling how many lives he really saved that day.  He will always remain in my heart.

Today I honor him.  Everyday we honor those that lost their lives to this tragic event on US soil.  Today our hearts are filled with grief and sadness for those lives that were lost today.  May we remember them everyday and may we never forget.  I'm at a loss today with words, I've written the same story every year, a story about a courageous man, and yet I have no words today.  Here are a few links so you can learn more about this man I honor every year.

Here is a link to my blog post about Lt. Charles Joseph Margiotta.  Here is last years blog post.
If you would like to donate to the scholarship fund or read stories about Lt. Margiotta, you can do so here.

May we always remember the 2,996 people killed that day and all of those suffering from various illnesses brought on by this day.  You see the people killed that day weren't the only one's who had lives affected, many people are battling different illnesses and diseases from the many chemicals flying through the air that day.  Let us never forget this day.  God bless America!

Lt. Charles Margiotta, thank you for your unwavering service.  Every year I will continue to honor you and learn more about you.

Update: Today we talked to Stephen (5) about what happened on this day 16 years ago and showed him pictures.  We explained it in a way that he could understand.  Having to teach your kids about this is not fun, but we made a craft to honor this day with.  It tore his Daddy up having to tell him that the "tower building men" couldn't put the towers back together.  Ever year we will get to teach him more as this day is an important part of our history.  This is not something we keep quiet about in our household.  Today is about those lives lost, and by remembering this day we keep those people in our hearts.  This is for you Lt. Charles Margiotta, I will teach our son of your heroic acts, and about your life, you will be remembered for many generations to come.  

Friday, August 18, 2017

How He loves us

Oh, How He Loves Us

One time we were part of a church.  They claimed that they accepted all people, “just come as you are.”  This was their mission statement of sorts.  They accepted you until they found out who you were, a sinner.  We were two people in love, two people who had worked out many issues both amongst themselves and personally.  Two people who love God, just two ordinary people.  We were nothing special.  One of us was heavily involved in the church, working on the Tech Team and working the camera both at the baptism area, sanctuary and elsewhere.  One of us sat in the sanctuary and listened to the message while the other one worked behind the scenes.  I thought alright, I like this church, I like what they stand for, I like that I can come with my sins and be forgiven because after all I’m human and they accept me for what I am, a sinner.  WRONG!!!

I got pregnant in January of 2011 and we found out in February 2011 (the 15th to be exact).  Once they found out we were sinners, suddenly we were shunned.  Suddenly the one who worked camera in the baptism area and in the sanctuary, could no longer do so.  The elders could never find out that someone got someone else pregnant outside of marriage, oh my.  Someone was told that they could no longer work in the public areas because then the elders of the church might think that they accepted this kind of thing, you know a child out of wedlock.  Here I was pregnant and yes, some very kind people in the church wrapped their arms around us and loved us through it.  They loved us through the tough times, the hard times, the scary times and they prayed for us.  It was a tough time for us, we needed our church’s support because my parents weren’t supportive and they sure as heck weren’t accepting.  What happened to come as you are?  Where did that go?  Just because I had committed a sin didn’t mean that God loved me any less, He loved me just the same as the day before.  He died on the cross for my sins, yet the church couldn’t accept that.  They wanted perfect people.  We were not and still aren’t perfect people, we never will be.  We are human and every day we make mistakes, but we are forgiven.

In October of 2011 we welcomed a precious little boy into the world.  He is perfection if there ever was such a thing.  Some members of the church came to see us, while others kept their distance.  My small group leader set up meals for a couple of weeks while we adjusted to the life of a new baby.  It was very kind and gave everyone a chance to come by and see the new bundle of joy.  I’m really grateful I was part of an awesome group back then. 

January, 2012 We wanted to get married in the church.  OH NO!!  Excuse us for wanting to do the right thing and complete our family, how dare us.  We were living together, after all we did have a very young baby.  We were told that in order to get married in the church we’d either have to go to the Justice of the Peace and do it or we’d have to live separately for a few months.  We couldn’t afford two separate rents, there was no way.  We fought with the church for a month about this.  Why wouldn’t they let us make things right?  “That’s our policy” they exclaimed.  Finally, on February 29, 2012 we ran off to the courthouse.  After we had that nifty marriage license in our hands we drove to the church and threw that in their face.  Now we could finally have the church wedding that we had longed for.  Here they were holding our sin against us, but Jesus has never done that. 

This brings me to the point of how He loves us.  He loves us as we are, though He yearns for us to be better.  He loves us even though we carry a lot of baggage and that baggage should be given to Him.  He loves us even though we make mistakes.  If God can love unconditionally, without judgement, without boundaries and without conditions, why can’t people love in the same manner?

Tuesday, June 27, 2017

Words from a Crohn's sufferers spouse

If I could find the words to tell my husband all the things I feel about this disease, I'm not sure he'd hear me.  Yesterday we went out of town so he could go to a checkup.  We usually go as a family, drop him off at the doctor's office and the kids and I go find some trouble to get into while we wait to go pick him up.  When he got back in the car yesterday he informed me he has a scope scheduled in a few weeks.  Ok, so now I have to find a sitter for 1-2 kids, I can take the 13 year old but I can not take the 5 year old to this kind of thing.  I always feel stuck, and it sucks immensely.  When I showed frustration about having to scramble to find a sitter for a procedure in 2 weeks, I was told that I always seem pissed off about him having procedures.  First off I do not enjoy them as much as he doesn't enjoy having them done, it's not a pleasurable experience for either one of us.  Secondly, I'm the only one who has to scramble to try to figure out the kid situation.

I said something yesterday to him about how I know he hates this disease for himself, but I hate it so much for our family.  This disease has taken over our lives in every way imaginable.  Sometimes it consumes us all as I take care of him and S.  Somedays I want to run out the door as he walks in the door because I'm so worn down.  Yesterday when I said something he said "yeah, I hate it more for myself." I didn't really know how to take that, it almost felt like we didn't matter at that point.  I wish he understood what it does to our family, how S doesn't really understand why his Daddy can't be around or do as much as he'd like.  I don't know how to tell him how I feel without setting him off and him thinking that I don't love or appreciate him.  I love him so much it hurts.  I love him so much that I could never leave him over a dumb disease.  It hurts me to see him in this situation that I didn't sign up for, but when we married I signed on to be his partner for life "in sickness and in health...til death do us part." That is what I signed up for.  Even if his disease had been as bad as it is now when we met, I don't think anything would be different.  He's my soul mate, my life partner, my husband and my best friend.

I don't think a Crohnie will ever truly understand how this disease affects those around them.  How miserable everyone can be in the middle of a flare.  How exhausting this disease can be for everyone around them.  I know he hates this disease for what it's done to him and his family, I just wish he truly understood what it does to me.  This disease isn't about me, but it sure affects me in ways he'll never understand.  Somedays I wonder if he can even see past himself, if he can see what it's doing to his family.  While we have no control over this, it still sucks.  I wish I had someone to cry out to who wouldn't think I was a bitch, someone to talk to who wouldn't judge me, someone to hug me and say "This is not the end, just a bump in the road." Someone who could be here to help me with the kids so  I could get just 10 minutes of peace.  Yesterday was an emotional day for me, a very tough day.  A day that I realized that my life has changed forever, and I'm not sure I'm ready for this drastic change.  He will always be my life partner, someone I trust, someone who can console me when I need it, and someone to talk to.

Wednesday, December 28, 2016

Damn You Crohn's

I know what you're thinking, "that girl posts a lot about Crohn's!"  Yes, yes I do.  You don't realize that this is sometimes the only way I can vent, raise awareness, and keep from going completely crazy.  I write to let my feelings out instead of taking them out on others.  Yes, my husband has Crohn's.  Yes, it affects our ENTIRE family.  Yes, it wears me down when he is sick.  Yes, it's hard taking care of a little person and a sick adult.  This is not a common cold where you're husband lays in bed and complains that his nose is running, or that he has a fever, or he needs an Advil.  Let me tell you a little about this disease Crohn's.

Crohn's is an auto-immune disease, which mean's that the healthy cells are attacking themselves instead of the bad cells.  No, I can't catch it, if that's what you're wondering.  Everyone experiences something different with Crohn's.   For my husband and many others, it causes severe intestinal cramps, bleeding, lack of life and lack of nutrition.  Most Crohnie's take meds but their bodies don't properly absorb them because everything flows right through.  Many people experience constant diarrhea.  For us that don't have it, imagine having eaten something bad that you're body doesn't agree with everyday and having diarrhea every time you go to the bathroom.  That is "normal" for a Crohnie.  It's not pleasant and many have accidents because they can not get to the bathroom in time. The life of a Chronie isn't always a pleasant one.  Many time their friends and family suffers because they can't go visit or they don't want to leave the house, or they don't want people to come over.  There is no cure, just expensive meds that cause lots of other problems.  My husband is currently on Humira, without insurance this medication (as well as many others) can not be afforded.  They have lengthy hospital stays and can reach their deductibles quickly.  This disease can affect both the large and small intestines.  Some people opt to have part of their intestines removed and end up with an ostomy bag in various places.  Other people are put on feeding tubes, just so they can receive the nutrients they need, without that they would die.

The foods we take for granted they can't.  I can eat salads, fresh fruits and veggies, and fried foods.  My husband can eat NONE OF THAT!!!  Roughage of any kind of a no go.  No spaghetti, the spaghetti sauce tears him up from the acids in the tomatoes.  Limited ground beef, red meat is hard to digest for everyone, but especially hard for those with IBD.  Fish and chicken are always a safe bet.  We eat a lot of carbs around here.  We buy stock in potatoes and macaroni noodles.  Mashed potatoes and mac n cheese are always on our menu around here.  Many times you fix dinner and they lose their appetite, you can't be offended by this.  So much can happen between the time you start and finish dinner.  You put it in the fridge and save it for later, maybe they'll eat it and maybe they won't.

Sleep for a Crohnie is sometimes hard to come by.  When they are up, so are you.  Sometimes I'm running bath water for him at 2:30 am.  I'd like sleep too, but his health and comfort are my main priority.  You can't be selfish when it comes to loving someone with this disease, if you can't handle it then don't make it hell on them.  We have heard of so many divorces from this disease, because it's not pretty, it's not glamorous and it's really shitty.  There have been times when I sit in the bathroom with him and rub his head or his back just to give him some comfort.  There have been days where I have picked him up off the floor because he doesn't feel like he has the strength to fight.  There are days when I have to remind him that not all hope is lost and one day there will be a cure.  There are days when I have to remind him that I'm fighting right along side him and I'm here for him no matter what.  When I said those vows "in sickness and in health...til death do us part" I meant every word of them.  This isn't a disease that crept into our lives, this is a disease we've dealt with for a long time.

I don't know how else to write about this.  This life sucks for all involved, somedays we're living life and other days we are just surviving.  Today we are in survival mode.  Today I am worn.  Today I'm struggling to take care of even the smallest of tasks because sleep eluded me last night as well.  If I ever meet that guy Crohn's in a dark alley somewhere, I WILL DEFEAT HIM!!!  We will find a cure.

If you would care to help find a cure, please go Donate to Cure For IBD!  100% of your donation is not only tax deductible but also 100% goes to research to help find a cure.  So far in 2016 we have donated over $100,000 to research.  Lets triple that in 2017!!!!  The man who founded this foundation doesn't sit in some fancy chair making millions while only a portion of your donation goes to research.  He's out there running marathons raising awareness, and none of his marathons are funded by donations.  Everything is an out of pocket expense for him.  Don't wait, go donate now!


Monday, December 05, 2016

IBD Awareness Week

You see I sit here a week before my husband has a colonoscopy, and I'm scared.  I'm not scared because they are putting him under, I'm scared of what they will find.  Oh you shouldn't be scared you say.  Well, you see, my husband has Crohn's, I've posted about it here before.  It's nothing new, but every year it's changing.  The disease is progressing, the treatments aren't working, he's miserable, and that's his new "normal."  Normal to most of us is living life, having fun, visiting our friends and family.  To someone with Crohn's thats not normal.  Normal to a Crohnie is staying home, not going anywhere, spending countless hours on the toilet every day, sleeping a ton, and just being lifeless.  There is no life to have, friends get neglected (not by choice), family fights for the Crohnie, and people suffer.  No one's family asks for this, and sometimes it comes unexpectedly.  My husband is a 33 year old man who has had the life sucked out of him, simple things he can't enjoy.  There are many times I go to family functions by myself because he's in too much pain to leave the house.  Crohnie's scout out a bathroom everywhere they go, it's normal to them.

Many caregivers experience "caregiver's fatigue", if you don't know what that is, look it up, it's real and it affects me all the time.  I not only care for a very energetic 5 year old and our home, I care for a sick husband.  He says sympathy isn't always enough.  What can I do for him?  I can raise awareness.  This week, December 1-7, is Crohn's and Colitis awareness week.  I'm making my stance known that I raise awareness for my husband, his friends, and many others around the world who are suffering.  Yes, there are meds to treat this horrible disease, but they too come with crazy side effects.  There is no known cure!!! You want to help my husband find a cure, visit Cure for IBD to see how YOU can make a difference.  They say it takes a village to raise a child, it also takes a village to find a cure.  100% of any donation you make goes to fund research.  The gracious gentleman who created this organization didn't do it for himself, and he isn't making a penny off of anyone's donations.  Everything that is raised goes straight to research.  We as a Cure for IBD family have raised over $100,000, lets keep that going.

I sit here today and wonder what the future holds for my family.  How many more hospitalizations will we have to endure?  How many more treatments will not work?  Will they find a cure in time?  Will he be gone from our lives forever one day because of this horrid disease?  Will my son be left wondering why daddy is gone?  Will I have to create a legend for Stephen to remember his daddy by?   Will I be left a widow at a young age?  These are questions that hit me everyday, they are not fun ones and they suck.  This disease has taken the lives of many and it won't quit until we find a cure.  Why am I so adamant about this?  Because something has to give for my husband and his friends all around the world.  Bottom line is WE NEED TO FIND A CURE!!!

If you know someone suffering with this disease or Ulcerative Colitis, hug them and make them aware that you are there for them.  They need you.  They need your love, support, friendship, and time.  They need a shoulder to cry on, a visit at the hospital, a ride to the doctors office.  They just need YOU!!!!!

Sunday, September 11, 2016

We Remember

Today it has been 15 years since tragedy struck our nation!  We saw a nation come together like we had never seen before.  We saw enemies become friends, and friends become better people.  We have seen our nation shaken to the core and 15 years later we still remember every detail about that day.  We remember where we were, what we were wearing, who we were surrounded by, and more importantly we remember how we felt.  We remember watching on tv the chaos, whether we were at home, school, or work, we will never forget that day.  

I was a Senior in high school in 2001, we had started school a few weeks before.  I was wearing some black dress pants, and a royal blue dress shirt, my hair curled and my blue framed glasses on my face.  I was in 1st period walking the halls to collect the attendance, when our assistant principal pulled me into a classroom to say "Kourtney, have you seen this?" To which I replied "No, Mr. Elliott, I have not, what is going on?" I watched for a few brief moments and scurried to get the rest of the attendance to the office before 1st period was over.  

2nd period came and I went to my English class.  We sat and watched on tv as the plane hit World Trade Tower #2.  Horror struck our faces, tears filled our eyes, and grief filled our hearts.  Who had done this?  What was going on?  Why would they attack us like this?  We sat in silence for most of the day.  During English I got word that a plane had hit the Pentagon.  I welled up with tears, and ran to my moms office.  You see I had family that worked in that building and I wanted to know that they were ok.  My mind stayed on my family until I knew they were safe.  I grieved for those loved ones who didn't get that pleasant news that day.  I grieve for them still.  

English came and went and the rest of the day followed.  What I remember after that is a blur.  I do know that we didn't accomplish much work in any of my classes the rest of the day.  We sat and watched tv waiting to find out who had done this to our beautiful nation.  We watched first responders line the streets covered in dust and debris.  We watched our President promise that he would hunt down who did this and make them pay.  We watched a country stricken with grief come together and pray.  WE WATCHED, and we haven't stopped since.  

We saw friends and loved ones commit themselves to serve our county because it had brought our country together.  They are still doing it!  It's so incredibly unfortunate that it took this act of Terrorism to bring our country together and to unite this country in prayer.  We still need to be praying for this country, whether it be for the next President or for our leaders, we need to pray and never stop.  God blessed this great nation with so many things and opportunities, He still will if we allow it.

To those who lost a loved one during the attack or fighting the war on terrorism, I pray for you. You are in my prayers and thoughts daily.  To the service men and women who have given so much for our country I salute you and would like to say "Thank You" for allowing me and my family stay free.  To all the first responders and their families, thank you for remaining self-less day after day.

God Bless the USA! May we never forget!

Every year I remember a fine man, Lt. Charles Joseph Margiotta who was killed in the attacks.  Here is a link to the post where you can read more about him. 

Thursday, June 23, 2016

Dear Crohn's,

Thanks for stealing my life and everyone involved in it. You see I no longer get time by myself because for some reason my husband is always too sick to watch our 4.5 year old so I can get away! It never fails, I can plan things for days in advance but it doesn't matter. I'm so sick of you! I don't even know what to do with myself anymore. I guess I should just give up all hope for getting much needed me time! In 5 years I won't even know what that is anymore! 

I'm experiencing caregivers fatigue! You see I not only take care of a 4.5 year old energetic little boy all day but most days I take care of a 33 year old man and our son! I'm beat, I'm worn, I'm tired, I'm depressed, and so much more. Half of the time I don't want to leave the house because I'm so damn depressed and frustrated. It's hard on our family to have one man down 80% of the time. It's a struggle for me because I'm always caring for Stephen. It's a struggle for Stephen because he doesn't understand why his daddy can't always play with him. It's a struggle for Colby because he feels so helpless in this fight! My family is super affected by this! If for one moment anyone ever thinks that someone's chronic illness doesn't affect everyone around them, you are WRONG! Everyone is left feeling helpless while trying to help the sick one cope! 

Crohn's, if I ever meet you in a dark alley somewhere, please know you will not live to tell anyone about my wrath! Beware Crohn's, we are coming for you and you will be DEFEATED!